Upcoming Radiation: Any advice about process, prep, time commitment?

@jim18
Proton is getting cheaper to put in. A year or so ago a radiation doctor predicted that it would be just as expensive as photon in a few years. It used to be they had to build a whole building to house the proton machine, Now they can fit it in a room or two.

I wouldn’t be surprised if the Cost at Mayo is real close to the cost for photon.

👍Pro: proton RT is more focussed, so is less likely to cause irritation to your bladder and rectum.

👎Con: proton RT is more focussed, so is less likely to neutralise early, undetected cancer spread in your bladder and rectum.

There is no difference in overall survival between photon and proton, and most people who do get irritation with photon have it fade in a few months (I'm a rare exception, but still, it's not so bad).

So if your insurance will pay for photon but not proton, you really have to look hard at the costs and benefits of shelling out a lot of your own money.

@northoftheborder I researched all treatments and chose proton as best even though comparative studies did not show a huge advantage to proton for prostate cancer. Discussed with insurance and a few proton centers. Choice was to pay all proton costs (not just the increase from IMRT) or have IMRT/IGRT fully paid (was at max after mpMRI, fusion biopsy, and PSMAPET). Work insurance covered over $100K. I had minor bladder irritation for a few months that was resolved with Gemtesa and Cialis.

@jeffmarc Mayo may be doing fine with Proton but about 25% of Proton centers are in default on their bonds. Emory University put in a bankruptcy auction bid to buy the Proton center that they staff but did not build or own for 20c on the $. No other bids so far. Mayo may Price proton competitive to photon, but costs are higher. The Medicare reimbursement is over twice the rate for proton vs IMRT photon. Other than buying at a discount in bankruptcy (that is one way to lower costs), it will probably take 10 to 20 years for the costs to even get close.

@jim18 Rumour has it that Ontario is building its first proton facility at Princess Margaret Hospital in Toronto (which makes sense, since Princess Margaret hosts a global top 10 cancer clinic).

Most likely, priority will go to cases like brain cancer (esp. infant and juvenile), where tiny margins are critical. The proton facility's goal won't be to turn a profit, but just to provide care where there is strong medical evidence that proton improves lifespan or heathspan.

I also found that Princess Margaret is researching one of the lower cost approaches @jeffmarc mentioned: strapping the patient in, tilting them to vertical, and turning them instead of the giant machine. I don't think that's ready for prime time yet, though.

And back to @jim18 's point, once a private cancer centre in the U.S. has made the enormous capital investment in a proton radiation machine, it's natural that they'll do their best to recommend it and keep it booked 24/7 to amortise that cost and hopefully get a return on investment.

@bwparker
I looked at all my removal and radiation choices. I narrowed my choice down to Proton or the Mridian radiation machine because it was one of two machines in the marketplace (The Elekta Unity being the other) that had a built in MRI so everything the doctor treated was in real time so the margins around the Prostate that exposed healthy tissue were less (2 mm vs 3-5 mm with most other radiation machines including Proton). That meant fewer side effects and better quality of life.

I was treated with 5 doses and finished in February of 2023. I was 69 with 3+4 Gleason, low Decipher and cancer was contained in my prostate. Get pre-prescribed for Flomax. After the third treatment, I had greater urine restriction which Flomax took care of overnight. Be aware that they will be checking the amount of liquid in your bladder as they need to balance the help you get from it being filled and away from your prostate and your comfort level. They can see that in real time as well because of the bult in MRI. Have a plastic hospital type pee bottle in your car as a temporary side effect for me was having to get to the bathroom faster for a while and I was happy to have it. Do get Spaceoar or one of the gels inserted to try and avoid any rectum damage.

Also, ask questions about why they choose a specific machine or treatment. Every institution has its own protocols and process for their choice and given that most choices, they say have equal outcomes, demand for a doctor or a specific type of machine can impact whether you get your choice or not.

@jim18
The main reason for these high costs is that they had to build a building to put the proton machine in originally, And that was up to the last couple of years. Those early proton machines were very expensive to build and add to the medical choices.

That has changed a lot recently because they don’t require such enormous structures for the machines And they can be placed in existing rooms.

The radiation oncologist who gave the talk at Mayo a month or so ago mentioned that he had only used proton four times, Even though Mayo is heavily invested in it. I mentioned this before I wonder what he said to his Patients about photon vs proton Not being that far apart in long-term results.

I'm scheduled for SBRT proton 5 fractions at Mayo in June. This will be on the Hitachi ProBeam-V machine. I'm on Medicare advantage and there is no problem with coverage. Good Luck.

Humans love novelty (protons), so do I, but don't dismiss photon technology which has 20 years of refinement in planning and delivery.
I took my rad onc's advice based on his experience with thousands of prostate cancer cases and had 28x IMRT/VMAT on a Varian Truebeam LINAC with spacer and markers. I'm two weeks post radiation. Mild urinary symptoms.

FORTY Ounces of bladder prep, you say? Shoot, for me
it was 16 oz. That's medieval
Age 70 4+3 local

@bob1955 Yes I am 1 week done at Mayo and 16 oz 1 hour before and that has been sufficient every time.